'I don't remember a day without pain': 12-year-old shares her battle with incurable blistering disease

Destiny Fuentes. (PHOTO: Instagram/ 0urdestiny)
Destiny Fuentes. (PHOTO: Instagram/ 0urdestiny)

A brave 12-year-old is spreading awareness for the incurable rare skin disease she was born with on YouTube that leaves her covered in blisters and open wounds.

After Destiny Fuentes (12) from Las Vegas, Nevada she was born, doctors noticed that she was missing skin on her ears, mouth and right leg which meant that she had to stay in intensive care for a month-and-a-half.

Doctors carried out biopsies on her skin and she was diagnosed with Epidermolysis Bullosa (EB) at just two-weeks-old.

Destiny’s condition means that she is in pain 24-hours a day and she has to see her paediatrician once every three months, change her dressings every two days to keep her fragile skin protected and infection-free.

Destiny has been hospitalised four times this year for a week’s stay each time because of infection.

“Basically, I have a layer of skin missing, the part that holds them together, so without this layer my skin is very fragile. My body is covered in bandages to protect my skin from infections since I have open wounds and blisters,” said Destiny.

“Physically, it affects my mobility since I have open wounds and blisters all over my body, I can't stretch my body well like others can. Physical activities like running, jumping, and even walking can be painful. 

She says it also affects her mentally, it makes her more anxious and aware of her surroundings and it makes me very cautious because she can easily get hurt.

“I suffer a lot, I have pain 24/7. I don’t remember a day without pain. The pain is overwhelming and sometimes it makes me sad and stressed.”

Despite being in constant pain and her condition affecting her mobility, Destiny has an incredibly positive outlook on life and describes herself and others with EB as “strong fighters who can handle it”. 

She regularly creates videos for her YouTube channel, Our Destiny, about living with the condition after being shocked by the largely negative representations of it on social media. 

“I try my best to stay positive and be strong.

“I have a passion for making videos on YouTube. When I searched for Epidermolysis Bullosa on social media, all I saw was sadness and pain. Yes, EB is painful, but I want to show the world that you can also be happy, live a happy life.

“I created my YouTube channel and my Instagram page to show how I live and manage EB but most importantly to spread awareness for this horrible disease.”

Epidermolysis Bullosa (EB) is the name for a group of rare skin disorders that cause the skin to become very fragile, meaning that any trauma or friction to the skin can cause painful blisters.

There is no cure for EB so treatment aims to relieve symptoms and prevent infections from developing.

Destiny makes sure she seizes the day and stays motivated by the prospect of helping other children with the same condition as her.

“When people first see it, they think it’s strange and confusing and they are curious. Many people think I got burnt but once they learn about EB they are very understanding,” she said.

“My friends and family are very proud of me and always remind me of how strong I am. They are always trying to make me smile and have fun despite all the pain I go through.

“If I am sad I think of the good things that I have and am thankful for. I think of other kids and how I can help them get through this or similar situations. It helps me stay strong for them and I always have hope that one day they will find a cure.”

As well as her YouTube channel, Destiny also shares her story on Instagram and she shared her advice to others living with EB.

“We have this condition because we are strong fighters who can handle it and we are brave enough to not let it hold us back in life,” she said.

“EB is not pleasant whatsoever but that does not mean we can't live a happy life.”

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